What if I die? Existential crises when caring for persons with severe mental disorders in rural South Africa

The role of informal caregiving is associated with various crises and psychological distress, including the caregiver’s fear of death and dying. A vast amount of evidence exists on the burden of care related to the psychological distress faced by the informal caregivers in mental health. However, there is a paucity of evidence on the existential crises faced by informal caregivers of persons with severe mental disorders. Exploring the existential concerns of informal caregivers is essential for understanding how fear of death contributes to their psychological burden, ultimately compromising mental and physical health. Such understanding is crucial for designing support strategies that foster resilience, reduce distress, and enhance caregivers’ overall health and quality of life. A descriptive qualitative approach was used. Semi-structured interviews were conducted with 12 informal caregivers who were purposely selected to participate in the study between January and June 2022. Informed, written consents for interviews and audio recording were obtained. Audio-recorded interviews were translated, transcribed, and analysed inductively on NVivo12 using thematic analysis. Two themes were identified, namely, navigating the challenges and distress of caregiving and caregivers’ experiences of existential death anxiety. Fear over the continuity of care in the event of their own death appeared to be closely linked to the death-related anxiety expressed by some informal caregivers. Such anxiety may compromise caregivers’ psychological well-being by heightening feelings of fear, helplessness, and uncertainty about the future, while also amplifying concerns regarding the capacity of people with severe mental disorders to function independently and receive consistent care within the community. Succession planning in caregiving is essential, with responsibilities shared among primary caregivers, families, and communities. Future studies should focus on developing and implementing stigma reduction programmes and caregiver support strategies strengthen coping, reduce burden, and promote the overall well-being of informal caregivers of persons with severe mental disorders.